Life, Autism, Disability, and More

Tag Archives: happiness

ESY has started back up, but in the two weeks Simon had off, we did lots of fun things. One of those was to hit the Galleria up in Houston.

Now, before anyone thinks I’m a cruel mom who forces her poor child to go shopping, please realize that he ASKED for the Galleria. I tried to talk him out of it. I offered all sorts of other options. No dice. He wanted to go shopping.

Not that he actually shops, mind you. Nope, he much prefers wandering around, staring at things, stopping to eat a cookie, and, in the case of the Galleria, checking out their awesome two-story fountain.

We were wandering around because I am one of those people that always gets lost in a mall. And there it was! Simon was super excited, and I told him to go ahead and sit on the edge because the ledge is pretty wide, and if you’re right there, you can feel the spray of the water as it hits down, and you get a cool breeze from it rushing past you. It feels awesome in the dog days of July.

What you don’t see in the picture below is that the fountain had stopped. It goes through its cycle, and then it pauses. I guess that’s when the water is all feeding back for it to run again.

Simon was waiting patiently on the edge, when – SLAM – it started back up!

He jumped. Almost fell over backwards jumped. Then he got a huge smile and settled back to watch it.

So as the Daily Show always said at the end…here it is…your moment of Zen…

 

simon at fountain


Image by Renjith Krishnan via freedigitalphotos.net

Image by Renjith Krishnan via freedigitalphotos.net

And other thoughts on someone else’s blog…

Abandoning Pretense wrote an awesome blog about what happens when her son got put on ADHD meds and how much the drugs helped him function.

Her statement is that she likes him better when he’s on the drugs, and she likes herself better when he’s on them because she’s in a better mood and able to deal with things better.

I get that.

I do.

But I wouldn’t say I “like” Simon better when he’s drugged.

I would say, though, that he’s happier when he’s drugged, and that makes me happier.

Like the blogger there, we also tried to avoid giving Simon drugs when he was younger. We fought it for years. He didn’t need them, we told ourselves. He’d be okay without them. Drugs are unnecessary. Drugs are a crutch.

But they aren’t.

They’re necessary. Sometimes.

I’m not saying that medication is the answer. But it is an answer, and in some cases, it’s the best answer. It’s like when you can pick “E” for all of the above.

We gave Simon everything we could, and it wasn’t enough. He still had melt-downs that he couldn’t control. He had anxiety that he couldn’t control. He got violent.

We started him on medication.

And things got better.

He was more relaxed. He seemed to feel better. He seemed to be able to enjoy himself more.

And, yeah, that made things better for us, but mostly for him. It’s not fair to withhold the medication from him, saying that he doesn’t “need” it.

We tried to stop it at one point, to pull it back, to reduce the amount of medication he took.

The difference was immediate. He went from having fun to needing constant redirection and constant reassurance. Anything that went off schedule was melt-down city.

We brought the levels back up, and he became himself again.

Yup, that’s what I said – he became himself. Because without the drugs, he couldn’t be himself. He had to be what his brain told him to be. His brain messed with him, made him anxious, made him upset. The drugs allowed him to get back to where he had been before. Where he could feel good, where he could feel “normal.”

So, no, I don’t like him better on drugs.

But I’m glad he’s on them.


Halloween 2013

Halloween 2013

What’s the cut-off age for Halloween?

When I was growing up, I didn’t worry about it. No one really commented on it (to me anyway), and as I got older, my costume got more complex. When I was 17 and dating, my boyfriend – now husband – actually made me up as a car accident/fire victim, going so far as to cover an eye with a patch and making me look all bloody and raw and burned. It was awesome.

But nowadays, I hear grumbling. I hear people complaining about kids who are “too old” or “too big” to go trick or treating. There’s the old joke about “if you can shave, you’re too old to go trick or treating.” The thing is, some boys start shaving when they’re 12 or 13. Is that too old to trick or treat?

The real worry that I’m bringing up here isn’t actually about general trick or treating. It’s about Simon.

He’s 12 this year. He’s not exactly small for his age, either. He’s in the 6th grade (should be in the 7th, but he was held back a year in kindergarten), and he’s definitely going to need to shave within the next year or so. Puberty is setting in.

He loves Halloween, though. Super duper loves it. He just brought it up to me again, and I had to tell him (for the eight-thousandth time this week) that it is on Friday, and that we can go trick or treating after school. The actual plan is to go trick or treating at the mall after school, and then hit the neighborhood around dinner time.

Will he be able to go?

Will people make snarky comments? Refuse him candy and other fun Halloween goodies?

I don’t know how he’ll feel about it next year, but what if he still wants to go? Will we have problems? Will we not?

I hate to quote the Doors, but the future is uncertain…and is the end of Halloween near?


halloween
I love Halloween. Looooove it. It’s probably my favorite holiday of the year (other than Christmas because, well, Christmas…).

I’m one of those people who can’t decide if ‘Nightmare Before Christmas’ is meant to be for Halloween or Christmas. Both of them are just so awesome.

Because of that massive love, we normally decorate inside and outside, lots of lights, lots of scary stuff, lots of not-so-scary stuff. You get the idea. We carve multiple pumpkins. My husband puts up lights in my office, around the TV, anywhere we can fit them. We put up paper cut-outs on the doors, on the kitchen cupboards, anywhere that tape can stick.

Not this year, though.

This year, Simon has decided to become obsessed with the holiday.

He checks the calendar every day. He reminds us that “Halloween is in October.” He tells us that we’re going to go Trick or Treating on Halloween. He tells us that he’s dressing up as a blue crayon (for the second year in a row).

When we have to tell him that it’s not Halloween yet, he gets upset. He doesn’t understand waiting for it, and he doesn’t understand the count-down. At this point, he is agreeing with us; he knows that it’s next Friday. But he may also agree that it’s ‘next Friday’ next week when it’s actually that Friday.

We promise him that we won’t miss it, that we won’t let him forget the day. But he still has a lot of anxiety about it. We don’t know why, and he can’t tell us why.

Instead, we are just trying to minimize everything we can. There are no indoor decorations. We have a minimal amount of outdoor decorations. We don’t mention the ‘H’ word unless absolutely necessary, and even then we try not to talk about it without using just veiled references.

Of course, time will pass, and it will be Halloween soon, and it won’t matter in the long run if we went one year without inside decorations.

But earlier this week, Simon flipped the calendar over and told me that next month was November, and that Thanksgiving was in November. Whoops.

 


simon with binocularsLet me start by saying that I love John Scalzi. Really. I do. I swear. If I didn’t, I wouldn’t have gone to his signing/reading up in Houston when “Lock In” came out. I was totally enthralled by his reading of the part of the “book” that wound up not being in the book.

But.

Then I read “Lock In.” Well, I tried to read it, anyway.

I stopped about 100 pages in. Because, regardless of his intent, what I got from it was autism and Asperger’s.

The threep suit that the main character (male or female – you take your pick, but I’m using “he” for short-hand in this blog posting) wore made him seem like he had Asperger’s.

The sensory stuff that he dealt with, the super-memory, being locked in his own head…like kids with autism who can’t communicate.

I was okay with it, and I kept reading because I kept thinking maybe I was reading too much into it. Maybe I was the one who just put autism into everything because I think about it so often.

Then it was time for the scene at the dinner table of the fund-raiser of the main character’s father. And there was an argument because many people at the table felt that the locked in people should try to be more “human” (even in their threeps), while others argued that it was the individual’s right to choose how they interacted with the world.

And I had to stop.

There is such an argument right now about how much people should accept. Should people on the spectrum be forced to be “normal”? So many people force their children to go through ABA and learn to behave like all the neurotypical people. No stimming (which, as you can read about, is often extremely detrimental to stop for many people on the spectrum).

I also remember, from oh so many years ago, an article that I believe was in the New York Times about a woman who was happy with her son, she kept saying that in the piece, but then when he was 8, he wanted to be Mickey Mouse for Halloween. And, clearly, that was unacceptable, and so she had to “fix” him to get him to be more like his peers. I wanted to slap her for forcing him into a role he didn’t want to be in. Why should he change – just to make her happy? To make society happy? The kid was happy. What difference did it make if he loved Mickey? There are plenty of adults who do, too!

It goes further than that, of course. I could write about this for pages and pages.

But I’ll just stop with this: imagine being truly locked in. Imagine not being able to communicate your wants and needs. And imagine that, like in the book, the government cut funding to things that would help you to communicate.

And now you know why I couldn’t keep reading. The reality is there. The thought of the insurance not covering things that might help Simon is a reality I don’t want to consider, even though I know that’s probably where the world is going.

But rather than end with that achingly painful thought, let’s think about something else. What if we looked at the behaviors of autism differently? What if we considered the good and the bad, and we helped those on the spectrum be happy instead of making us happy?


jump

Jump!

I keep seeing all these stories posted up online or in the news about people with autism. They are all stories of success and hope. They talk about being diagnosed at the age of two, and not talking or making contact with the outside world at all, but now they’re performing Shakespeare and doing complex algebraic equations at the local university.

What am I supposed to take from those stories?

Because we haven’t had any of those amazing success stories. We’ve had long, slow, and not even steady progress. From what I can tell, when Simon was five, he was on a two-year-old level. Now he’s 12, and he’s maybe at a four-year-old-level.

But will he have any more future movement? Or is this it?

We stopped his outside OT and Speech (he still gets it at school) because he wasn’t getting anywhere. He’d hit a wall.

He still surprises us some days, but other days it’s like there hasn’t been any changes in years. We still don’t have actual conversations. We still have to test him to see if he means what he says by re-asking questions and asking questions in different ways. He still does lots of “TV talk,” and while some of it might be slightly more appropriate, not all of it is, and, in fact, most of it isn’t.

But with his medication to handle his anxiety and aggression, he’s happy.

Shouldn’t we all be happy then?

Is achievement the only way to be happy?

What is happiness when it comes to this?

And who decides all this crap about what is “good” and what is “success”?

I know, this blog asked a lot more questions than it answered. But they’re all important questions. And, honestly, I think the questions are almost more important than the answers. Because the answers aren’t there. Not yet. And they may never be there. We won’t know what he does until he does it. We won’t know what “success” is until we’ve achieved it.


blue skyLast week was Simon’s 12th birthday. He asked for a party at Chuck E Cheese, and he got it. Sure, his idea of a party is different than ours; all he wanted was some candles to blow out and some presents. He didn’t really want to play any of the games, and he pretty much ignored most of the guests. But he still enjoyed it. Even if, on one level, I didn’t.

Why didn’t I?

Because I knew that our families had blown him off. On one side, he didn’t even get a phone call or a card. On the other side, he got a card with a gift card in it…but it wasn’t even mailed until his birthday. To me, it’s horrible. It’s painful. How can they ignore him? How can they not even send an email when I mail them pictures of him in a little league uniform?

But here’s the thing: Simon’s sky is still blue.

What do I mean by that?

I started reading a book called “Headspace.” It’s an awesome book, if you haven’t read it yourself. At one point, the author talks about when he was in training to be a Buddhist monk. (He spent about 10 years training.) He had a problem with meditation, and one of the teachers told him a secret. Even when the sky is grey, when the clouds are dark, when a storm is brewing, there is still a blue sky above all of that. No matter what problems there are, there is still a sense of peace hovering, a blue sky we can tap into and know that everything is still good.

Simon is in the blue sky. He doesn’t know that I feel like the sky is grey, that I feel like there is a storm brewing. He doesn’t have expectations from these family members. He doesn’t get bothered. His sky is blue.

I thought about the blue sky when I read the news that broke on his birthday, too. A local town, Lake Jackson, had an issue in their school district. The teachers in the 5th grade class apparently offered “awards” to their special needs students. Awards like “Most Gullible” and “Drama King.” Horribly mean-spirited and something that should never happen.

When I read it, I thought that Simon would still have his blue sky in that situation, too. Even if we, as his parents, were upset, he wouldn’t be. He wouldn’t get the insults. He’d be happy.

But those people – the ones who wanted to give the awards, the teachers who thought it was okay – they’re the ones who would, in the end, suffer for their actions because of karma. Because they may not realize it, what’s they’re doing is teaching children that it’s okay to mock and tease people who don’t have the ability or knowledge to fight back or protect themselves. These children will someone be the caretakers of these adults. What if the adults have a stroke or get Alzheimer’s? And then these children – the ones who were taught it was okay to mock the defenseless – are now defenseless themselves? Maybe they don’t realize the impact of their actions, what it may lead to in the future.

Now, to be fair, I do feel it’s straight out wrong to mock or tease cruelly at all, these teachers don’t seem to feel that way, and perhaps the only way they can learn to be a good person is by thinking about how their actions will impact their own lives. Sad that they can’t be kind to people for the sake of kindness, but at the very least, you’d think they would be kind for their own sake.

Those teachers – they’re the storm. They’re the grey skies. They’re what bring us down, what make us worry, what upset us. But we have to remember that there are still blue skies up above them. That we can tap into that blue sky and stick with the positive. Because we can all be in the blue sky if we want to be.